July 28, 2009

ADDED 7/31/09: Check out this blog post about how a huge health care charity, the AHA, co-opted bloggers to spread a "healthy message" while requiring them to avoid reporting on competitors AHA's sponsors Merck and Macy's.

I want to make something very clear: my point in the previous post was not that the people Roche identified as "influential bloggers" were sell outs. My point was that when a company like Roche decides as part of a marketing action to define who is influential in our community, everyone in the community needs to stop and think about what that means.

When I said we need to look at the posts of the people who went to this shindig my point was not that these people had sold out, but that because this was an attempt to co-opt leaders in a vibrant online community, we need to look at what happens next. Did it work? The blogs of these people would be the obvious place to look.

We know that drug companies have a long history of targeting and co-opting doctors who are considered influential. These efforts have been very successful. Not so incidentally, we are about to hear a lot more about the problems with meters, since the FDA is considering taking on the meter manufacturers and demanding they improve their meters' accuracy as there is solid evidence that meters meeting the currently defined woefully broad "acceptable" range of meter accuracy is killing people.

This topic was discussed recently in the NYTimes. I have already blogged about it. Did these other influential bloggers? I don't know. They each have their own area of focus and meter accuracy might not be relevant to the topics they cover. But with this issue emerging, what better time for Roche to build "partnerships" with the blogging community.

I know people like Scott Strumello--the very influential--and brilliant--blogger whose blog clued me into this story--are not about to stop reporting about drug company malfeasance no matter how many plane tickets Roche buys him.

I hope Scott will look into the question of what happened to the patents for all the non-invasive blood sugar meter patents that have been tested over the past decade, found to work well, and then disappeared forever. Usually this kind of product disappearance is a sign a large company has bought the patents to keep them from being used by competitors. Since meter companies make their money selling you strips at $1.07 a piece, a meter that does not use comsumables could destroy their cash cow and the price of buying the patent is nothing compared to lost profits. I think of this every time I use my blood pressure meter, for free.

I understand that some blogs are about reassuring people and reaching out and sharing compassionate friendship to people dealing with a very tough diagnosis. I do not suggest that isn't important. it is very important. If this meeting had been defined as a meeting of people with Type 1 who publish supportive blogs for other people with Type 1 diabetes I would have kept my mouth shut.

But it wasn't. It was described as a meeting of the top influential diabetes bloggers. A look at who was invited made it clear that it included Type 2s and that it included people who, like me, do not do compassionate outreach, but who review and endorse products for Type 2s. But it also stuck out that the people who were included who review product did not publish negative reviews about the random number generator Roche sent them this past winter, either. A salient point? Who knows. If nothing else, it is one worth some discussion.

This is why I raised the issue. Not as an attack on other bloggers but because in all the reports I read of the conference in the blogs of these other bloggers I did NOT see anyone raise the issue of what it means to let a company like Roche define who is influential. No one seems to have a problem, either, with the idea that Roche will decide which bloggers newly diagnosed people should be steered to by giving beautifully produced, glossy blog lists to doctors to distribute to newly diagnosed patients.

If I had been invited, I would have made the exact same points.

If you are invited to a subsequent get together or start receiving marketing materials from Roche--and trust me every communication you get from a company like Roche IS marketing material--give it some thought yourself.

The research on the impact of drug company marketing on doctors is that doctors, when asked, report that they aren't influenced by the meals, toys, classes, junkets etc. they get from drug and device companies, but that their prescribing patterns tell a very different story. That's why the drug and device companies do what they do. And if the are now moving to do it to us, we shouldn't expect to do any better than the doctors.

40
comments:

Jenny, I think you should take your own advice. Making a comment like "feel good/cat blogging" directly attacks at least one person's blog I can think of. If that was truly not your intent, then please don't write something that reads so much like a cheap shot.

Hi JenneyAre you serious?, have there actually been blood less, non invasive quality bg meters made but then not marketed and manufactured?? :{ Next thing you'll be telling me is that SOME doctors concern themselves with excess profits!!Much of your information has been a core source, including your 101 book,for my controlling and managing my diabetes. I forever will be indebted to you and your writings. Much respect and affection. 10.1HbA1c 2/07 5.2 HbA1c low carbs and 2 500mg met/diem 2/09 PAX VOBISCUM JUST BILL

Well of course every material sent from Roche is marketing material. The fact that you think we're co-opt-able and not intelligent enough to figure out they are trying to sell us into their products is insulting. Almost every blogger who went knew that ahead of time and said so in their own post! The reason why I was so upset at your first post is because you, whether you realize it or not, are assuming we're idiots who can't think for themselves. A day-long meeting does not turn me into a Roche drone. Thanks!

I also have no idea what this is: No one seems to have a problem, either, with the idea that Roche will decide which bloggers newly diagnosed people should be steered to by giving beautifully produced, glossy blog lists to doctors to distribute to newly diagnosed patients.

No one told me I'm going in a glossy brochure. And you should probably keep in mind that Amy Tenderich, author of DiabetesMine.com, and a leader in thought-provoking analysis of the industry, helped choose who was invited. I think Amy knows a bit about what she's doing too.

"Cat blogging" is a generic term used all over the web. I used it as a generic. I only follow the blogs that track research and news and have no idea who might be or not be a person with diabetes who blogs about their cat.

One point that seems to have escaped quite a few of the people who were at the conference is that all the rest of us know is what we read in their blogs.

What I read in the blogs of participants I checked out was that people had been flown in, put up, and fed. That Roche is going to do some kind of outreach to doctors where they give them a list of influential blogger. That it was wonderful to be with the other influential bloggers.

Scott Strumello raised the issue of it being a marketing ploy, but I did not see anyone else mention this. Whatever other people thought I only saw what was in their blogs, and the impression the blogs give to someone who does NOT have insider knowledge was what I responded to.

A lot of people are jumping to conclusions about MY tone without realizing that I might have jumped to conclusions in response to theirs--based on what they'd written rather than what they knew.

1. I write honestly about my life with type 1 diabetes and I remain unaffected by your opinions. I do, however, respect your decision to blog about the topics you hold closest and I applaud you for your continued dedication.

2. Since you have highlighted the fact that you were not at the literal table for these discussions, I'll confirm for you that I spent much time advocating with the Roche team on behalf of a more accurate meter. You may touch base with Kelly Close or Jeff Hitchcock to confirm, should you feel the need. As someone in pursuit of a healthy pregnancy, meter accuracy is of critical importance to me. Never assume that people who may be more "feel good" writers are not fighting for advancements in our collective care. I also addressed the fact that Roche wanted to be written about in the attendees' blogs in my post (Please visit the fifth paragraph of the post on this page for more information, if you want.) But I don't bring these points up to point fingers at you. I bring them up purely as clarification, in case you missed those moments.

My thinking on this event has evolved over the last couple of days. At first, I found the discussions interesting. Now I just find them to be troubling.

In previous times, I have had jobs that had very strict policies on conflicts of interest. In those jobs, I would have been fired for taking a trip like this.

And I have watched with interest as medical groups, universities, and scientific publications have struggled with conflict of interest scandals.

It amazes me that the bloggers who went were blind to this obvious conflict.

Jenny, I also am surprised by the negative comments about your alleged jealousy. When I read your first post, I knew that you were just joking. Nobody doubts that you are influential. If you weren't influential, you wouldn't have stirred up such a firestorm.

I am infuriated that the non-invasive testing meters are still not available as much as it infuriates me how much the "consumables" cost.

I like your blog and very much appreciate your Blood Sugar 101 website. I am recently diagnosed (6 months) and went from 11.7 to 6.1 thanks to YOUR website, not my doctor's or the DB "educator's" advice.

I have given your website to everyone I know in person with DB and also to everyone I've met online with DB. I've also mentioned it on my own blog.

There's definitely a place for "touchy feely" stuff but in my personal opinion, sensible information about what we CAN do is every bit, if not more, important.

You've helped me immensely in getting my DB under control. I was floundering badly until I found your website.

I work in a hospital. No one, not the physicians, nurses, techs or secretaries are allowed to take any gifts from pharmaceutical companies or let them bring in lunch. We were told we cannot even take a pen. We are influenced by these gifts even though we may say we are not. These companies are all about making money, not about helping anybody.

It is wonderful that the bloggers got to meet up with each other but don't fool yourselves, Roche is not interested in you. They are not really interested in the health of the patient. They are only interested in making money. Of course they will listen carefully to everything you say - they are in marketing. You are their customer and they can use you to get to more people. They knew who you were and read your blogs carefully before this meeting.

This is better than direct advertising on TV that is seen by people with and without diabetes. Your blogs are viewed by those with diabetes. And if the doctor hands each new diabetic a list of blogs prepicked by Roche, well, I am suspicious.

Jenny, thanks for what you write. I have normalized my blood sugars by diet alone with the information your have provided. In my book, you are an influential blogger.

I also read and enjoy some of the bloggers who went to the meeting. I will continue to read their posts.

I'll stay out of the stoush. I don't know enough about it. First I knew of it was Kerry's mention of it and the group photo on dLife.

I love to travel - I could have told them there are cheap air-fares from here to the US at the moment - but I suspect I wasn't on the list either :-)

I tried talking to Roche and Lilly over here some years ago, suggesting that they would profit from promoting Jennifer's "test, test, test" advice, but I was ignored completely at that time too. C'st la vie. Next.

For what it is worth, I wrote the FDA about the meter accuracy and strip cost.It's the usual form letter but, at least they responded.I read your message with both interest and dismay and regret yourdissatisfaction both with the blood glucose reading technology and alsowith the costs. Although the FDA has no authority to regulate costs orpatents, it is empowered to regulate the actual medical devices.

Please see some advice from the FDA about reducing the degree of errorwith blood glucose meters and accessories:http://www.fda.gov/MedicalDevices/Safety/AlertsandNotices/TipsandArticlesonDeviceSafety/ucm109519.htm. You should also be aware that the FDA iscurrently considering support for strengthening of the standard by whichsuch equipment is manufactured. The New York Times published a reportto this effect on July 24, 2009 which you may find of interest. Pleaseseehttp://www.nytimes.com/2009/07/19/health/policy/19monitor.html?_r=2&ref=health.

You are thanked for your concerns about this matter, your realizationthat use of any medical product requires an awareness of risk versusbenefit, and are wished the best in the future management of your healthcare.

With regards to noninvasive meter technology, there is an option that might work and that's to go underground. Find engineers willing to work on such device as an hardware open source project. Be completely transparent as to its design, what patents are infringed, and calibration. Which, by the way, is far more disclosure than what hardware manufacturers do today.

I'm not sure exactly how to distribute it if we are telling the patent holders to go screw except maybe a PR shit storm might get them to back off. Might even find some manufacturer somewhere willing to put it through FDA compliance testing. I push on this myself except I'm busy pushing on speech recognition issues for people with upper extremity disabilities (like me).

Jenny, as the blogosphere has developed, it has suddenly become a powerful -- and "influential" -- media force, rivaling the traditional media.

And with influence must come responsibility, including codes of ethics. Undoubtedly, those who are challenging your comments believe that they are not influenced by freebies. However, the same arguments have been used by those who ran afoul of ethics codes in science, medicine, and journalism.

I wold suggest that those folks who are complaining might more productively spend their efforts in proposing codes of ethics for health bloggers, instead of attacking th proponents of higher ethical standards.

Jenny, thanks for raising this issue. You are showing the courage and responsibility that has made you sch as influential blogger.

Your comment is probably the most valuable suggestion to grow out of this debate.

Many bloggers do not come from the kinds of backgrounds where they have had to deal with these issues or have become aware of how skillful highly paid PR people have become at manipulating public opinion.

I don't question anyone's integrity, but I do question their ability to withstand techniques that have corrupted people far more brilliant and accomplished than any of us here.

As a person set to launch my own blog site for diabetes type 2, I am incensed by what you are doing to divide the blogging community. For someone with your stature and excellent information that you publish, your temper tantrum is not going unnoticed by the blogging community.

Yes, you have burned a few vital bridges to your continued success. If all that matters is visitor count, then you have lost your purpose and are not writing to educate people with diabetes.

Your on going display of anger is not needed by people with diabetes. It is defeatist and demeaning to your readers. We need a positive attitude from bloggers.

We may not be perfect, but the battle needs positive attitudes and meaningful information. This you had been doing (with some anger showing and occasionally well placed) until the last two blogs.

I am glad that this debate is happening - thank you Jenny for this post (I appreciated the clarification and thought it was well said) and helping start this discussion.

To Allison: I don't think that Jenny or anyone else thinking you are co-optable or influence-able by marketing material is an insult, or means they think you aren't intelligent. At all. I think it means you are human. I think ALL people are influenced by gifts and marketing material - that's why companies do it, because it works.

Studies have shown that it works with doctors (in a myriad of ways - from prescription habits to the research doctors do). Studies have also shown that doctors think they themselves aren't affected by it, but think that most of their colleagues are. Most people who think they aren't affected by it actually are.

I think that I am intelligent, but could definitely be influenced by gifts, trips, and marketing materials. Just like I think that you are intelligent, but could be influenced by such things. Which doesn't mean I would never take them, but I do think it's important to acknowledge the possible - or probable - impact.

I also think there is a huge range between becoming a "Roche drone" and not being influenced at all... someone being influenced doesn't mean they are a complete robot. The fact that you are so defensive and take it as a personal insult makes me worry that you aren't stepping back and examining the issue.

Kerri: I'm so glad you brought up meter inaccuracy. It is SO frustrating to me, and not very safe either. Last year I called Lifescan with 20% or more errors on high blood sugars - which meant the difference in several units of insulin - and they said it was just fine if it was within 20%. I also had some 20% errors on lows - like 59 vs. 71. When I called them with a 29% error, they tried to claim it was actually a 20% error by some weird math and the fact that I had tested a 3rd time.

Your experience with LifeScan is identical to mine. Customer service has a script which attempts to convince you that any number is within the acceptable range.

This is why I feel people were deluded in thinking that by going they had an opportunity to educate Roche. They know very well their meters are inaccurate AND that the inaccuracy is dangerous in the low end of the range. How could they not. They must get hundreds of phone calls about these problems.

Listening to people politely and seeming to "learn" is another marketing trick used to defuse customer anger. No one at Roche is going to improve their meter accuracy because you had a dialogue with a marketing person.

If the FDA mandates it, maybe. But first they'll put pressure on the congress people whose campaigns they fund to intervene--probably using some scare tactic about how improving meters will raise Medicare costs for taxpayers.

Again, I have to ask, why can I buy a netbook for the same price as a month's worth of strips. Not even the meter, just strips, which when dissected have no electronics involved.

I'm baffled how you could think that "all I care about is traffic count." I raised the issue about traffic only because it should be obvious to anyone that by definition an "influential" blog would be one that is read by a lot of people. With hundreds of diabetes bloggers available to choose from, the choice of some of the Type 2 bloggers was strange.

I found it baffling that Gretchen Becker was excluded too. Only someone completely out of touch with the Type 2 diabetes community could have overlooked her influence.

Traffic count, especially how much of your traffic is returning traffic, is an important measure for any web site. If people were not returning to my blog in significant numbers and if those numbers were not growing, I would reconsider whether what I was writing was of value.

So I referred to my stats to support my belief that my blog does reach a lot of people. Had other "influential" bloggers responded that they were getting ten times that traffic and I hadn't met the cutoff, I would have taken that as a reasonable explanation.

I'm sure I don't get anywhere near the traffic of some of the bloggers cited, but when it came to some of the Type 2s it was a different story.

Jenny, you stated: I do question their ability to withstand techniques that have corrupted people far more brilliant and accomplished than any of us here.

Roy Poses at HealthCare Renewal frequently writes of brilliant doctors who avow they are above influence-peddling and conflicted activities . . . and then reveal by their actions that they are not. From a personal standpoint, as long ago as the late 1960s I witnessed first-hand how corporations seek to find the one or two individuals within a university department who are susceptible to the "open-mindedness" required for 'influence shifts.' These individuals can change a paradigm within a department, and determine how resources are well- or ill-spent. For all intents and purposes, Roches (and other like corporations) have merely extended and refined the techniques used in the past.

I think I must agree with Jim that the firestorm you have created is very revealing about the attitudes of d-bloggers--some do 'protest too much'. You can take comfort in the fact that your exclusion from the summit is probably indicative that the thouroughness of your investigation and steadfastness in truthful reporting identifies you as one least likely to be influenced. (Or else you pissed off someone who defined the list of invitees, and your exclusion was your cyber-slap-in-the-face.)

From what was posted my guess is that the reason I was excluded was that Roche asked a high profile Type 1 blogger relatively unfamiliar and possibly uninterested in the Type 2 community to select participants. So it is possible that person simply didn't know about my blog. Hard to say.

The fact that Roche turned to a Type 1 to define the influential blogs when Type 2s make up 90% of the worldwide diabetes community is interesting, though I'm not sure what, if anything, it means.

The howls of outrage teach us why it is so hard to eliminate conflict of interest. They are the same kinds of howls we hear from senators who are largely funded by insurance companies who are trying to destroy the public funded option for Health Reform in the US. The insurers are working very hard to convince the public that these senators are working for the public good not the good of those funding them, and tragically, much of the public is buying into this.

Jenny, I admire you for not backing down despite heavy criticism. This whole discussion clearly shows how far behind the blogosphere is in dealing with conflict of interest issues that already have radically transformed mainstream media and medial publications. We have a long way to go, but you are helping raise the bar for everybody.

i'm a type 2 diabetic. i don't really know about the other bloggers, i admit.

i read your blog all the way from the Philippines. been reading the comments and i see the reactions. from negative to positive.

well, in my book you are influential.because of you and your blog, i was able to drop my weight by 53lbs as of today (took 9mos). i'm still losing weight too! along with the weight loss, my blood sugar levels are good. i'm a 5.5% too.i wouldn't have known that i needed to keep it below 6% to be 'healthy'.

there were things i learned from your blogs that my doctor never told me. i have to say though that my doc is really sincere about helping me. long story why i say that. i'll probably tell you that next time.

back to my story, through your blogs i learned how to alter my diet. my doctor has allowed me to shift then lower my metformin dosage.

anyway,i'm not really good at this. in fact i'm not sure if i made sense at all. all i actually wanted to say was that you are a positive influence to someone who's halfway around the world from you.

Jenny - I've been on vacation, but I read about the 'summit of diabetic bloggers' a couple weeks ago,and noticed you were not invited. In my mind, I wrote a response, and much along the lines of this and your previous post. Keep up the good work. Of course you would not be invited.

Wowie! Methinks some people do protest too much! I read Manny's list of attendees and see very few Type 2s. I suspect Roche are working on the basis of "divide and conquer", not only between Type 2s and "Real Diabetics", but between "recommended" and "not recommended" blogs.

I checked out some of the complainants and quite frankly I find more useful information for me on nondiabetic blogs like Mark's Daily Apple, Heartscan, Protein Power etc.

Incredibly this one

http://carbophile.blogspot.com/2009/08/daft-question.html

is on Amy Tenderich's recommended list. If I found myself on such a list I would ask to be removed immediately.

Wow, Jenny, not sure where to start here... I'm traveling so behind on all this post-event chatter.

1) We know who you are, and of course you are just as valuable as any other member of the OC.

2) You can't please all the people all the time. Very sorry that you were not included this time around!

3) If you HAD been invited, I'm sure your coverage here and attitude would have been QUITE DIFFERENT.

4) For Jim Purdy: you do realize that the patient community is co-dependent with pharma, right? They make the medicines and devices that keep us alive, and if we didn't work with them, we would never have great organizations/events like ChildrenWithDiabetes. So please don't imply that we should shun all kinds of sponsorships. That simply isn't going to happen. Naturally, we need to work to deal with them in the most ethical way possible.

We are not "Co-dependent" on the drug industry, because they aren't dependent on us. They make much more money selling drugs like Viagra to men in their 20s who don't need it or marketing drugs to thicken eyelashes than they do on drugs that might really help people with diabetes.

You're a Type 1 so you don't have to contend with the near-useless drugs the industry inflicts on Type 2s at great expense, which guarantee that most Type 2s continue to havee A1cs near 8% and serious complications. The oral drug companies have convinced doctors that tighter control isn't necessary which is why over the past decade the average A1c of a Type 2 has gone up, not down, as doctors now delay starting them on insulin much longer than in the 80s.

Before the advent of insulin, Type 2 was described as a disease mostly found in immigrants, especially from Eastern Europe and controlled with a very low carb diet. I found a medical book from the 1920s that went into this in depth.

However, Type 1s starved slowly to death before the advent of insulin with a typical survival of three years. Without insulin they could not survive.

The medical book was a big fat 1920s home medical guide I found at an antiques shop some years ago. It was more expensive than I wanted to pay for the ten or so pages about diabetes so I didn't buy it. I wish I had now. I don't recall the exact title.

There's a good history of Type 1 diabetes treatment in Bittersweet:Diabetes, Insulin, and the Transformation of Illness by Chris Feudtner

Just to clarify once more: myself and all the other T1's out there would be long dead by now if it weren't for the insulin produced by the Pharma industry. For that I am grateful. And in that sense we ARE dependent on them.

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